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Roger N. Meyer "...of a different mind "
Puzzle Pieces Image

FORMAL BEGINNINGS OF A NEW CAREER

Copyright 1999 © Roger N. Meyer

Introductory Remarks 2005®

 

 

 

     [This paper is a case report of a real Vocational Rehabilitation client whose family was served earlier by the author as a disability counselor.  This is the first of two major paper requirements for the Western Washington University Center for Continuing Education in Rehabilitation, the author's first basic job developer's course.  This paper was submitted and accepted in December, 1999.  To preserve confidentiality, individual and some agency names have been changed.]

 

OPENING THE CASE

 

     On Monday, 14 December 1998, I made a home visit to John and Judy Johnson.  They were concerned about their son's lack of interest in planning for his future. Mike just turned 21, and has been a member of the Portland Asperger Support Group since its founding in September 1998.  I am the founder and moderator of that group, which meets under the auspices of the Independent Living Resources Center, Portland.  I knew a little about Mike and his father as a result of that involvement.

 

CLIENT BACKGROUND AS A SPECIAL EDUCATION STUDENT

 

     John and Judy were concerned that Mike seems to spend all of his time at home, generally in his room involved with his computer.  Since leaving the Portland Public Schools on a transition plan that was terminated by the district 13 months ago, he had not been involved in activity other than church events outside of the house.  In 1996, at the age of 17, Mike withdrew from his public high school.  Immediately following his withdrawal, he got his GED at Portland Community College.  He applied for and passed his GED without any preparatory study.  Everything was accomplished in one day.

 

     Following his receipt of the GED, he returned to the public school, this time as a special education transition student.  In his special education records, there is no indication of his active participation in the IEP transition team meetings.  There also is no indication of substantial parent involvement in the process as well.  Earlier, while he was enrolled as a regular special education student, his IEP Team had  placed him in four inappropriate internship jobs at two sites.  At the first site--a hospital--his duties involved three separate jobs.  The first job was food service back-counter work dolloping ice cream into bowls in the dietary kitchen.  The second job consisted of warehousing and inventories in the cold storage food unit; and the third job took place in a clerical setting where he stuffed envelopes.  Following failure in the first setting, the school provided a second placement at an Espresso outlet close to his high school.  Both placements involved an assumption that he was fit only for repetitive, marginal employment, and none of the four jobs reflected his expressed interest in computers.

 

     Reports of his conduct and performance on the job were uniformly negative.  One workplace superintendent suggested that were work involving his primary interest in computers offered to him, that should only be in the distant future.  Apparently, even she was of the opinion that exposure to low-skill, highly repetitive work would be essential to his introduction to "the real world" of work.  During the half year he was involved with these placements, his parents were not active participants in the IEP process.  The school district had made no effort to inform them of their parental rights, nor had they involved Mike in any other than a passive role in planning by securing his signature to the work placement agreements.

 

     When Mike returned to the district upon obtaining his GED, the school district personnel resumed their approach to him almost as though there had been no break and no change in his status.  The only difference was that his parents were invited to what now became a transition team, and Mike also attended the meetings. The school personnel were at a loss in knowing where to start with planning for his future.  The "plan" they came up with consisted of a string of imperatives directing him to "get out there and do it" with no specific direction, progress benchmarks, or a clear identification of his transition goal(s).  The team made no effort to recognize Mike's interests or potential even as shown by the results of three-year old incomplete special education eligibility evaluations.  There had been no effort to re-evaluate him during his two and a half years in special education, nor were the parents aware of their right to request an independent evaluation to provide fresh information for transition planning.

 

     Numerous entries in his special education file documented his lack of executive skills in planning and time management.  No effort was made to assure that he would receive training in these areas during his transition.  Despite the school's legal responsibility to support life-skills and other practical training in transition, how he was to attain even specified goals was left solely up to him and his parents.  The transition team offered no support other than a once a month appointment for Mike to meet with a school counselor at his former high school.  No clear purpose for these meetings are identified in the plan, other than for Mike to report on his parents' interest in integrating him some into the family business.

 

     At the time the IEP team chose only Mike and his father to be the actors in Mike's transition plan, his father was gravely ill with bone cancer and the Johnson household was involved in a prayer vigil for his recovery.  After aggressive medical intervention, Mr. Johnson responded to treatment, and began a slow road to cancer remission.  As a result of Mr. Johnson's illness and Mike's lack of executive functioning skills, Mike was allowed to drift into a period of self-destruction to the poorly designed transition plan.

 

     From my experience as a special education advocate for disabled students and their families, I can say that the school district's treatment of this student and his vulnerable family is not uncommon.  Seeing an opening to collect state money for a special education transition student without offering any services to the student or his family is particularly common in Oregon.  The Office of Special Education Program's monitor's April 1997 report showed the state and its districts to be derelict in designing and providing effective transition services.  The Portland Public School District, one of the districts monitored by the evaluators, was given an especially negative report.

 

THE FAMILY BUSINESS

 

     The Johnson's operate a niche market household decoration accessories business.  The business develops and sells custom accessories such as ceramic decorative switch plate covers and similar items in ceramics, developed in Portland, but manufactured to exacting specifications overseas.  The business is highly sensitive to swings in the national and world economy and the home-building, remodeling, and gift enterprise market.  Most of its sales are by catalogue, and most of its outlet for sales is located in the small to medium-sized gift shop industry. During his illness and slow recovery, Mr. Johnson was physically in no condition to oversee family affairs or the family business conducted at their large home.  Mrs. Johnson and the two Johnson boys became full time caregivers to their father, taking time off only for school attendance and frequent church meetings.  During that time, the family hired an assistant for the business, who has lived for three years in a ground floor bedroom in the house.  This assistant has become much like another member of the family.  Mike and his younger brother received as much attention as could be spared from caring for their father's needs and the demands of the family business.  Even with the hiring of an assistant, the business went into steep decline at the depths of his illness.

 

     The Johnson's had moved to Portland from the central Willamette Valley a dozen years ago.  John has considerable business acumen while Judy is a creative, high-energy artist and artisan.  Together, they built a family business that had proven very successful until John's illness caused a substantial drain on family financial and emotional resources.  Judy's involvement in the business as the creative designer was critical to the growth of the company.

 

 

OTHER SIGNIFICANT ELEMENTS

 

A family functional assessment based upon observation of the impact of religion, the family business, autism and public education

 

     The family has been heavily involved with fundamentalist-Christian church activities for years.  Attendance at services and duties towards the maintenance of the small communities of like-practicing congregants has occupied a great deal of the family's time regardless of where it has lived or its financial condition.  Whether a family is bound up with religious duties or not, and whether it has an in-home family business or not, time for this family has proven to be a precious, limited family asset.  Having a difficult to raise, disabled child has put an enormous strain on this family with its assets already stretched thin.  Throughout his upbringing, Mike has proven to be an emotional and behavioral challenge at home, in school, and even the limited social activities of the family's church community.

 

     Through most of his childhood, and into his first year of public school as a Sophomore, Mike's autism had not been diagnosed.  His diagnosis as a student with autism first came from an evaluation conducted by the Oregon Department of Education Columbia Regional Autism consultant to the Portland Public Schools.  It was later determined in a medical diagnostic process that he has Asperger Syndrome, a particularly problematic type of autism on the higher functioning end of the spectrum.  Until recently, little was known of this variant of autism.  His non-disabled younger brother demanded and received far less of the family's limited attention and had been able to make his way through the world far more successfully than Mike.  When seen together, the brothers appear emotionally distant from one another.  When seen all together, there is an atmosphere of caution and an undertone of vigilant reticence as family members interact with Mike.  Neither his parents nor his younger brother can reliably predict Mike's responses to even the simplest of events or functional demands.  In the past, he has plunged into lengthy episodes of depression during which he sleeps long and odd hours and interacts minimally with members of his family.  He has never received medication for his depression, or counseling outside of the confines of his church's own psychological counselors.

 

     Without having known the family until the parents' invitation for me consult with them, I can only surmise that the family's total commitment to its religious community, the success of the family business, attendance to the needs of its eldest child, and the survival and recovery of its principal breadwinner has been a constant source of stress.  Except for its own tightly-knit religious community, the family is "closed" to ordinary social and institutional interactions in the larger community.  All of its members' relationships to such institutions are instrumental and direct--very businesslike and of brief duration.  This pattern of limited community interaction has left the family vulnerable to extraordinary stress with no significant connection to greater community resources designed to help families cope with stress issues.

 

     Although their younger son has remained in religious school and prospered, by the time his religious school could no longer handle Mike's needs, his parents concluded that they had little choice but to enroll him in the public school system.  It was apparent that although other benefits attended to his schooling in them--mainly the small class size and opportunities for one-on-one education--his response to instruction and other students proved a tremendous strain and challenge on the resources of a private religious school system clearly unable to serve him.  At the time he was enrolled in public school, neither parent had any experience in dealing with public education for their children.  Since none of their close friends had children in public school, they were hampered in understanding the demands of the public education system or the complexity of their son's transition issues as he approached an age of eligibility for adult community support services.

 

     Even once they moved to Portland, for a long time the parents were unaware of the legal obligation of the public school district to provide special educational assistance to their son no matter where he was being schooled.  Whether this could be done was also not clear in special education law until the mid 1990's.

 

     Faced with day to day crisis management with respect to Mike, the family appears "stuck" in a time warp in planning for his future.   On numerous occasions, both parents confided to me that they simply did not understand their son, or how to assist in his self-direction.  Both parents had hoped that his involvement with other young adults in an intergenerational support group might help.  It hasn't.  Mike's inward-focused orientation is so strong that his attendance at only a few meetings early in the support group's history has not led to continued interest in even this protected involvement with others outside of his immediate family.

 

FIRST CASE DEVELOPMENT FAMILY CONFERENCE

 

     My first meeting with the family on Monday night, December 14, lasted four hours.  His parents knew I had knowledge of what special education is supposed to provide, and also had some insight into the self-determination challenges facing young adults on the autistic spectrum.  Mike's school history and current behavior were the chief topic of discussion, but it was clear that the parents had participated in Mike's special education without knowing his educational or their parental rights.  In this regard their situation was no different than the majority of parents whose children are in the special education system.  His mastery of the general curriculum topics was not in question.  The school made no effort to consider him Talented and Gifted (TAG), which he clearly was.

 

     Mike is an autodidact, which means he drives himself to learn with little external prompting.  As is typical of all persons with Asperger Syndrome, he excels at subjects which draw his interest.  He appears indifferent to others, although he is a "natural learner" in several non-interest fields.  This explains the ease with which he passed his GED once he was free from the lock-step pedagogy of the public school system.  His social skills and expressive language style were and are in sharp contrast to his academic performance.  (A thorough evaluation of his cognitive behavior may indicate processing gaps or differential degrees of functioning.)  His response to stress and anxiety has been to retreat and self-isolate.

 

     Mike's school records document indications that he has severe specific learning disabilities manifested through his short-term working memory deficit and major organizational challenges such as staying on task.  During his regular enrollment in the district, prior to his first leaving, a school system "hack" physician diagnosed him as ADHD (but with little "H") and with a co-morbid diagnosis of depression.  This physician saw Mike for only a few minutes, and shared his observations only with the evaluation team.  At that time, parents were not mandated members of special education evaluation teams, and as a result, never saw his report.  In his report he made no recommendations regarding medication or therapy useful in treating either condition.  Despite clear indications otherwise, this physician found no signs of autism.

 

     Soon after the doctor's report was submitted, one of Mike's teachers requested that the state regional autism consultant be consulted.  The teacher suspected that Mike was high functioning autistic. The consultant's evaluation showed him to be autistic.  The district never did change its primary characterization of his disability, and after he quit the system to attain his GED, there was no impetus to pursue the proper classification.  Both test results by the autism specialist on their face clearly indicated need for a knowledgeable person within the district to refer him for a medical diagnosis of high functioning autism.  No one ever made that suggestion to the parents, nor did the district offer to have him medically evaluated by its usual resource, the Child Development and Rehabilitation Center of Oregon Health Sciences University.  Until Mike was out of school, including transition, he had not received a medical diagnosis.

 

     Even if it would have had a medical diagnosis to substantiate the educational evaluation by the state autism specialist, the Portland Public School district had no clue about what remedial or other related services would work for him.  As was typical for this district, it did nothing, collecting money from the state for his designation as a special education student but offering the student no related services.  Also typical of the district was its handling of these kinds of students in pushing them through the system so they age out of the system with no provision of services, hoping all the while that uninformed parents will make no demands on the system.

 

     Things got worse.   Mike's depression deepened, and he developed school phobia.  The family decided to allow him to quit school during his senior year.  Within a week of his quitting, he took the GED and re-enrolled in the district.  Following his re-enrollment, school district officials made no effort to be any more insightful about Mike's further involvement with the special education system than they had been in the past.  In his records there was acknowledgment of his intense interest with computers; nothing was done to determine whether this was a direction and a career worth pursuing.  Instead, the general tone off the transition IEP and its poorly identified goals and objectives demonstrated very low expectations of life success, and indicated only menial level employment as a likely future for him.

 

[These case notes made 14 December, 1998; revised March 9, 1999]

 

SECOND HOME VISIT -- An outline for family case management

 

     On Thursday, March 11, 1999, Mike's father left a message for me to return his call.  By this time, Mike had attended several additional Asperger Support Group meetings and had shared much of his personal life history with members of the group.  His story was almost completely devoid of mention of his parents and his younger brother. Group members commented on this; and despite a similarity of observations from several persons, Mike did not respond.  As he described his life story, he spoke of himself with the pronoun "I", but during his entire monologue he only once referred to his family members by name or even by title,  This was during his opening sentences, where he described his family composition, rather than identifying his family members using any other terms.

 

     It was shortly following the support group meeting that Mike expressed an interest in moving forward in his transition, and John asked me to meet with the family to discuss the steps necessary to do so.

 

     Since his father had provided his transportation to the meeting and returned to bring him home, I visited the family that very evening, and after some questions to determine where Mike "was" in his thinking, he and his mother and father agreed to a schedule of events as follows:

 

     Have his psychological and medical reports brought up to date to include transition recommendations.  At that time he was still technically eligible for transition services from the public school district.  This would require a visit to his diagnosing psychiatrist at OHSU and at least one visit to an independent educational psychologist.

 

     Consider applying for separate medical coverage under the Oregon Health Plan.  He is presently covered under the family insurance plan for a duration unknown.  [It turned out that shortly after this visit, the family insurance carrier dropped him from coverage.]

 

     Request a review and copying of Mike's complete educational records, including special education.  Mike made this request the following day, by FAX using language I proposed to the family.  I had earlier visited the records archive at the Special Services office of PPS on 14th Ave SE, and secured a form for this purpose.  During the same visit, I went to the office of the Director of Special Education of the PPS, and found that the director would not be available for some time.  The assistant director had full power to act in his absence.  She was in and I introduced myself.  I notified her that I would be securing a power of attorney to represent Mike in future contacts with the school district.

 

     Since he had just turned 21, the Portland Public Schools still had educational responsibility for him until the age of 22, according to IDEA 1997.  This would allow a re-opening of his IEP for purposes of current evaluation and testing in (a) full functional adult evaluation; and (b) learning disability testing and evaluation by professionals familiar with Asperger Syndrome.  Although this testing is not available to students prior to their completion of academic K-12, Mike's status as a GED recipient without diploma moved him into a separate category of transition student whose services could be at once more comprehensive, yet limited, under terms of the IDEA 1997. I made this proposal to the family following my discussion with a branch manager of a VRD office likely to serve him.   After consulting her map and his address, the branch manager said that Mike was not eligible for additional services available to certain zip code individuals within her branch's Federal Enterprise Zone.  Those services would have included the use of an advocate from the RSA-funded Mentor Project.  Nevertheless, Mike was entitled to regular VRD services as a transitioning young adult formerly under special education status by the public schools.  The schools, she said, should pay for the testing.

 

     I contacted the director of a branch closer to the parents' residence and asked about the issue of testing.  He also said the school still might be responsible for paying for both tests.  With this information in mind, I recommended to the parents that Mike request a re-opening of his IEP with the district, this time only for the purpose of funding the two thorough independent evaluations. Other than the testing, neither Mike nor his family had any use for the Portland Public School District.  I had earlier also contacted the Director of Special Education at the Multnomah Educational Service District and asked about the issue of shared funding between the two agencies, education and VR.  She suggested that Mike was of an age where he may indeed "fall through the cracks" of the Portland Public School System.  She suggested that an arrangement could be worked out between the ESD and PPS to fund the testing, given the fact that Mike had not received FAPE from the district while enrolled prior to his first leaving the system, and even following his return.

 

     I made the suggestion that Mike execute a limited power of attorney to allow his parents to represent him on health and vocational rehabilitation matters, and for myself to be his legal representative regarding education.  With a full explanation of his right to terminate the power of attorney for any reason and at any time, Mike agreed to this arrangement.

 

     I proposed that Mike apply to the Oregon Health Plan for health, dental, and mental health coverage.  I had earlier visited an intake worker at the Multnomah Central Health Center at 12710 SE Division, and he assured me that he would be eligible.  I took an application and plan(s) literature and brought it to the family that evening.  [Mike's father later accompanied him to that center, and he was enrolled.]

 

     By the evening's end, the family had a "strategy" which allowed them to approach transition to Vocational Rehabilitation on a step-by-step basis, where visiting one site after another would assure an easy eligibility period with VR, and provide their son with a sense of control over his future.

 

CALLS AND VISIT III

 

     Several progress calls were made throughout the following days.  Mike and I had agreed upon Wednesday, March 17, as the next day he would be available to view his records.  John had sent in Mike's request for access to his records, including special education.  John said Mike's psychologist and his family pediatrician were willing to "go to the wall" for Mike because they were disgusted at the treatment he had experienced by the schools.  The psychologist even suggested the use of an attorney, and I suggested that the parents might wish to engage a family attorney.  Although John and Judy are running a successful business, they do not have a personal family attorney.  I suggested that in view of the likelihood of Mike's long-term needs and the past problems with John's health, the family might wish to discuss arrangements to assure support for Mike's future.

 

     I picked Mike up for some agency visits on March 17 at 8:30AM.  The first thing scheduled was getting his power of attorney documents notarized and witnessed.  Before we did this, we got his birth certificate, passport, proof of residence, and social security card from the family's safe deposit box.  I took him to the nearby DMV office for an official state ID card.  Having that in our possession, we went to a bank where the power of attorney document was notarized.

 

     We then went to the Portland Public Schools' Special Services building, to the records room.  His complete general curriculum as well as his special education records were already copied per his earlier FAX request.  One document in his special education file indicated a date of 3-15-99, while another was dated 3-16-99.  Mike's special education records had been recovered from Ms. Fischer's desk by the records management clerk for copying.  (After my earlier departure from her office, she had immediately requested them for purposes of review.)

 

     Following receipt of his complete records, we went up to Ms. Fischer's office, where Mike presented his letter of request to re-open the IEP for purposes only of testing for VR.  His letter constituted a formal Prior Written Notice request.

 

     We received a receipt for the letter's acceptance, and Ms. Fischer also copied the limited power of attorney authorizing me to act on Mike's behalf.

 

     At the conclusion of a busy day, Mike and I returned to his home at about 2PM, and I spent an hour with his father  outlining our progress, and strategizing over the next steps.  I recommended the following:

 

     That Mike's pediatrician be asked for a formal diagnostic referral to a psychiatrist in the community experienced in conducting an Adult Asperger Syndrome diagnosis. for purposes of an adult AS diagnosis.

 

     That Mike set appointment dates for testing with a neurophysiologist familiar with AS, who could perform a complete adult functional evaluation.  Appointments would also be set with a clinical psychologist expert in the field of diagnosing individuals with Asperger Syndrome for learning disabilities, and making specific recommendations to Vocational Rehabilitation and other agencies, including the Portland Community College.  I knew of two competent VRD vendors and suggested their names.  The parents were aware that either VRD or the school district could assume the cost for this testing.  They were uninterested in waiting any longer, and decided to undertake the expense on their own. [ As things turned out, the evaluation and testing was not done.]

 

     That with a recent medical diagnosis and the testing, Mike could then apply for VRD services.  I made tentative arrangements with the VRD branch manager to be available as an AS consultant to Mike's counselor if he felt that would be of help in his work with Mike.  Since I was not charging the family for my services, I did not intend to request a contract for services with VRD.

 

     That with the same recent medical and psychological testing information,  Mike could apply for SSI, with his parents acting as his representatives during this process.  An earlier interest in Mike's applying for SSI had been deferred due to Mr. Johnson's severe health problems.  [It turned out that this matter was further delayed throughout the year.]

 

     That Mike request an official copy of his GED from the appropriate office in Salem.  Since he was tested independently by the Portland Community College, the official record of his testing and award is maintained in Salem.  He will need the certificate for his permanent records.

 

     Some discussion took place about Mike's needing to maintain his own records.  Up to this time, his parents had taken charge of all of his records.  This topic was left open at the conclusion of the visit.  [Mike has since not begun to keep his own records.]

 

     I made an appointment with the public school assistant director of special education to discuss Mike's request for testing at district expense, without a re-opening of his IEP.  The reason for this direct route was purely economical.  The district did not deserve an award of nearly $11,000 from the state to reopen his special education status only for the purpose of paying for about $1700 worth of tests.  Because of its failure to provide FAPE Mike during its previous open file period, Mike's parents and I both felt the district should pay this expense and let him move directly into the adult services stream.  Mike chose not to attend the meeting.  I told him and his parents I did not expect the school district or the ESD to offer the testing without a fight.  If there signs of resistance, I suggested they could use their time and energy better by forging ahead with VRD.

 

[These case notes completed March 17, 1999; revised March 20, 1999]

 

CONTINUED CASE NOTES

3-21-/22 1999 plus later dates

 

MIKE'S THOUGHT PROCESS

 

     On Sunday Night, March 21, I had a late meeting with Mike's father at his home.  The reason for visit was to pick up their copy of Mike's special education records and to allow me to review them prior to meeting with the Portland Public School official at 8AM, March 22, at her SE 14th Avenue office.

 

     I expressed my concern that Mike had begun to ruminate about an email relationship with a young woman in Coos Bay.  (John had mentioned this as a concern that had come up in the past for other young women in Mike's life.)  He met her at some church youth conference (time unknown) and sent the AS support group members a notice he would not be attending March 28 (having missed March 14) due to his intent to pray during the three hours of the Sunday afternoon meeting.  Because Mike's emotional maturity is considerably below that of a person of his chronological age he was disappointed in previous attempts at relationships with girls and young women.  They rarely did anything to encourage his interest, but when they failed to reciprocate his attention, in each case he would become profoundly depressed.  John indicated that these episodes had lasted for several months each time they occurred.

 

     According to John, Mike's romantic involvements are totally ”in his head."  When he is in a depressive episode, Mike withdraws from contact with others...even his own family.  His father's concern was that although Mike was "up" and relating more to the nuclear family then, that level of functioning is a direct response to his fantasies about his present "ideal candidate," a term Mike used in referring to these young women.  The metaphor of a shining knight on a white horse is reversed, where the young woman is viewed as a soul mate and helpmeet, a view such persons have taken umbrage in in  the past once he actually engages them in real-time conversation.

 

     I inquired about what John and Judy had done in the past when Mike got into this pattern of rumination.  He said neither one of them knew what to do.  In the past, Mike was allowed to drift for weeks through fantasized thoughts, engaging his parents, his brother, and any person who came within sight in endless monologues about his intentions and the young womens' likely responses.  He rarely if ever acted on these fantasies.  When he did, the bubble burst and he would be "essentially lost to us" during a depressive episode.

 

     As a way of involving Mike with the real world of young adults, especially young women outside of the confines of meeting them only at church groups I urged John to encourage his son to attend sessions of class at the local community college conducted by a social skills instructor who teaches basic communication skills.  This could be his first serious attempt at independent interaction with other adults outside of church and the AS Support group.  Attendance at the class did not require full matriculation at the community college.

 

     Although no placement or other tests would be involved, John had doubts that Mike's previous bad experience with education in any school setting could be easily overcome even for such a venture.  In discussing Mike's likely response to outside social contact, John said that such fantasies had become an ingrained pattern to Mike's way of thinking, and he felt powerless to persuade his son to abandon them or modify the amount of energy expended on them.  [Mike did attend one of nine sessions of the class.]

 

     I suggested that perhaps the psychologist Mike had been seeing might be of some use in doing some cognitive behavioral work with Mike around his thought processes.  John said he would speak with Mike, and encourage him to develop a "work contract" with the psychologist.  [In informal inquiry following this visit, John indicated that the psychologist had no understanding of cognitive behavioral therapy.  I let the matter of further counseling with a professional drop due to Mike's impending appointments with VRD.]

 

     Despite the time separation involved between VRD and any other counseling appointments, Mike demonstrates an inability to make the mental transition required to keep the two experiences separate in his mind.  I had experienced this confusion in his discussions of past events involving other matters with him.  His expressive speech often takes on a very confused, jumbled recollection of events, and is characterized with a rambling through numerous, often unrelated topics difficult for the listener to follow.

 

RECORDS REVIEW AND MEETING WITH THE SPECIAL EDUCATION OFFICIAL

 

     In reviewing Mike's special education record prior to the meeting, I paid special heed to the reports from his school to work placement supervisors highlighting his learning disabilities, executive function challenges, and immature social skills.  All of the recommendations of all four placement supervisors suggested that he will need strong, external guidance and monitoring in future employment.  Only his last placement supervisor suggested how inappropriate the placement was in view of his interest in computers.  As mentioned above, no attention was paid to this last observation by his transition IEP team.

 

     In the transition team meeting notes, the district's special education consultant and his psychologist from his former high school both recommended that since further formal education seemed unlikely to be of benefit, that it would be best for Mike to pursue an employment track with the family business located within his home.  What the transition team actually did regarding this matter is recorded in notes above.

 

     Because his transition plan never identified the nature and extent of his progression into the family business, except for one meeting the following month for which a date had already been set, Mike did not return for his monthly "check-in" at his former high school.  The last IEP, scheduled for review on 1/26/99 did not take place because the school system was advised by its attorney that state regulations or district policies allowed the system to drop the student and close his IEP if he failed to meet the requirement of his IEP for monthly check-in.  [This interpretation of the law was later characterized as "preposterous" as I described it to an Oregon State Department of Education legal specialist in the compliance section at the state capitol.]  In the midst of the family's continuing crises over the father's ill health, the school district sent Mike -- not his parents -- its difficult-to-understand form used for prior written notice with a box for "action" checked, indicating it was unilaterally dropping Mike from its rolls.

 

     His records contained no indication that the school district attempted to contact him through any other means, or that an IEP Team meeting was scheduled or held at which this "change of placement" and notice intent to terminate services was considered.  The district form letter was sent him October, 1998.  Not understanding it, neither he nor his parents took any action to object.  The notice was written in technical language undecipherable to a non-attorney.  Since he was the addressee , he may have received it and did not know what questions to ask or pursue an inquiry any further with the district.  When I showed him the letter while reviewing his files, he had no recollection of either receiving it or understanding it.

 

     In my 8AM meeting with assistant director of special education, she displayed a letter from the PPS counsel advising her that present state administrative regulations and school district prevent the reopening of his IEP due to conflict with "school year" requirements.  I believed the state regulations and district policies were out of compliance with IDEA, and I told her so.  The purpose of transition services are to assure a no-dropping-through-the cracks handoff to other agencies.  Since I had his complete special education file with me, I reviewed its notes, evaluations, and observations by every educator and writer all indicating that to the best of their judgment, Mike was incapable of independent. informed decision making.  I asked her whether in view of this documented material the district could support its argument regarding either his informed consent or its non-compliant notice procedures.  She essentially stonewalled me by suggesting I contact the district's counsel.

 

     One factor contributing the district's response in denying any coverage for additional evaluation for Mike was what its attorney may have seen as a technical opening allowing district non-action statement contained in Mike's request for a re-opening of his transition IEP.  The only purpose for a re-opening was to secure testing. In that request, Mike made his request with reference to the value such test results would have to VRD.  That was enough to set the red flags flying, although on later review, purpose of the request, and the ultimate beneficiary of its results were not allowable grounds for the district to refuse a re-opening of his IEP.  Even had it been opened during a brief, formal meeting just for the purpose of approving  a neuropsychological evaluation and a specific learning disabilities evaluation, the district was obligated under IDEA 1997 to fund such evaluation, whether or not VRD was to be the ultimate beneficiary of the results.

 

     At the time the request was made, the Oregon Revised Statutes and Oregon Administrative Regulations were both of out compliance with federal law.  To reverse this situation, the student and parents would have had to file for a special education Due Process hearing and a likely appeal to US District Court.  This was not a course the family was open to, nor was it one would I have counseled them to consider.

 

     At the meeting with the assistant director, we both recognized that in being asked to fund a full adult functional evaluation, the district "might" be able to support the additional testing.  She acknowledged that the WAIT-R and Vineland testing it had performed over three years ago was incomplete and demonstrated the inability of the school district's own psychologist to understand the spread in raw scores because of her lack of understanding of high functioning autism.  That psychologist was frank in expressing her reservations about providing meaningful recommendations based on the inappropriateness of the instruments (though she didn't say that directly).  Her remarks stated that the testing provided an inconclusive picture of his strengths as well as his challenges for a School To Work Transition IEP.

 

     I proposed that for reasons of basic fairness the district should allow some independent evaluation to now take place.  Although she agreed that equity would be served, this was not to be.  Eighteen business days after our formal prior written notice request was received, citing advice of the attorney to the district, she sent me an email  to me denying Mike's request.  There was mention of a "cut-off" date for such requests, something not recognized by the state's administrative rules or even known to anyone at the state Department of Education prior to the district's action.  The district claimed that because the student's request was made after a certain date, his request could not be honored.  Her email was later followed by the official school district prior written notice form sent in the original to Mike with a courtesy copy to me.

 

     Prior to taking the initial action of requesting that the district pay for his testing, I said to both parents and Mike that this was a "long shot."  It turned out to be that; one that fell short.  I advised them in advance not to expect cooperation from the school district but to proceed with Mike's application to VRD and request the same testing through that agency.  That became their agenda following the school's response.

 

     I was curious about the legality of the school's entire handling of the request, and told the family I would pursue the issue on my own, just to satisfy my curiosity, to the state Department of Education.  I emailed an inquiry to the office of the legal specialist for the Oregon Department of Education and later received a written response and a telephone call from an attorney in that department encouraging the parents to pursue Due Process.  The district's policy, its practice, and its response, on its face, was non-compliant.  Satisfied by the answer, I informed the parents of the state's response, and then let the matter drop.

 

[The gist of the response I got from the state was as follows:  The state regulations on special education make no exceptions with respect to eligibility age cut-off, all referred to as "through age 21."  Neither the state nor the local educational agency is permitted to write or put into practice policies that limit the student's access eligibility to special education through policies unrelated to the student's age, and only for the administrative or financial convenience or relief of either the state or the local educational agency.]

 

     In discussions with Mike's father following the receipt of the state's response, we reviewed what had occurred at the time when Mike was in the school district's program for transition.  The absurdity of the program's primary objective, that Mike be encouraged to "test" his involvement in the family business by participating in on the job training activities under supervision of his parents was all too apparent.  At the time the IEP was signed, John was near death.  Heavily medicated and in the midst of chemotherapy, he had agreed to anything just to get away from the table and return to his sickbed.  His father was incapable of overseeing any OJT  for his son in the family business.  I asked whether Mike would have proven to be an asset to the business at that time or at the present.  His father was frank in saying that Mike would not be a suitable employee for the venture due to his immaturity and substantial executive function deficits.  He did, however, fully support his son's interest in computer programming, and continued to provide books and self-instructional material for Mike's self-education.  He said that he mentioned his son's interest at the transition meeting. There is no indication in the written records that the father's support of the one activity of interest to the son was ever acknowledged.

 

WHERE MIKE IS MID MAY, 1999  

 

     Like the rest of his family, Mike is heavily invested in the spiritual concerns of his religion.  He is a devout practitioner of prayer and meditation.

 

     Except for brief excursions on family outings, Mike spends nearly all of the time in the family residence in his room working on his computer.  He intends to integrate his interest and obvious competence in programming into a private business venture for income.  He has no understanding of the business acumen and management training essential for success in this field.

 

     His lack of understanding of what it takes to manage such a business successfully means that he will require substantial assistance and support to be even partially self-supporting.  Mike, his vocational rehabilitation counselor, and his father are all of the impression that it is essential that Mike have substantial engagement with the world outside of the home environment prior to serious undertakings towards such a venture.  Without training in social skills (most notably reciprocal conversation training)  and personal organization and self-management training skills, Mike will not be able to function in a competitive employment environment, whether it be of his own making or that of an independent employer.

 

     In his few past brief encounters with the world of work during his final year as a student with the Portland Public Schools, his workplace supervisors all noted that he required intensive personal attention, coaching, and personal direction to accomplish the most rudimentary of work tasks.  All of their reports indicated extremely low performance levels.  There is nothing to indicate that the passage of four years has materially altered his challenges in executive functioning.  If anything, the passage of time has served to further reinforce dysfunctional behavior noted at his initial finding of eligibility for special education as a tenth grade student.  Such manifestations include preservative thought, intense rumination, a continued low to moderate level of depression, general sense of low self-esteem and self-trust, inability to demonstrate follow-up action through selection of priorities, failure to identify and understand the sequencing of tasks, and a sense of knowing when a task has been sufficiently completed for movement towards initiation of the next task in a multitask assignment.

 

     Mike's general recognition of his limitations in the world of work are very much in evidence, and form a basis for his continued frustration and what can best be described in layman's terms as an overwhelming state of ennui and despair.  In the past, his response to requests that he increase his pace of work, or consider a task completed when he was not satisfied with its completion has been withdrawal and further limitation of expressive communication.  The one avenue open to him for relatively unfettered emotional expression appears to be through his writing.  This he has not pursued recently, and like many intense interests of high functioning autistic persons, may have become an interest engaged in with a seemingly unmitigated abandon, and then dropped.

 

     At present, Mike is not on medication.  Highly individualized psycho pharmaceutical regimens generally consisting of SSRI's and broadband anti-anxiety medications (example, Clonozepam) have proven effective for the control of dysthymia, anxiety and ruminative thought.  These conditions are strongly associated with Asperger Syndrome and their co morbidity is widely accepted and looked for by medical diagnosticians.   Very slight to mild seizure disorder affects approximately 25% of individuals with Asperger Syndrome, although much adolescent onset seizure activity appears to stabilize and even substantially disappear by the time the person attains mature adulthood.  Since Mike is under the care of a family doctor (pediatrician), his entry into the Oregon Health Plan also means a change of personal physicians.  An increasing number of general practitioners and internists have a fleeting familiarity with autistic spectrum disorders but the number of physicians who can claim specialized, expert knowledge in the field of adult autistic medicine remains very small.  Medical care for adults with Asperger Syndrome consists primarily of prescription and medications maintenance for manifestations of the disorder.  There is no known medical "cure" for autism.

 

     Mike's father notes that within the past six months that he has begun to recognize and express his emotional states more openly than in the past.  He has also expressed increased interest in his future beyond the immediate confines of a totally supported family home environment.  Until recently, this interest has been expressed in the vaguest of terms.  When pressed for greater detail, Mike's response has been to emotionally and physically withdraw from the communication setting.  He appears increasingly uncomfortable with this response, and recognizes that in order to form concrete plans for the future, it is necessary to outwardly express his need for help.  Asking for help has been a life-long challenge for him as it characteristically is for most persons with Asperger Syndrome.  In moving for real-world accommodations, he recognizes that he must clearly express his needs in order for others to help him obtain them.  Expressive verbal communication and social skills training and coaching would do much to address this need.  To address this, Mike might benefit from Speech Language Pathology training with a professional familiar with Asperger Syndrome.

 

     Specialized services in the field of social skills and expressive language training are available for mature adolescents and young adults through community service providers on contract with Multnomah Community Mental Health, and Behavioral Network, Inc., both resources open to him once he applies for and is accepted as an Oregon Health Plan enrollee.  [Mike was found eligible for OHP coverage in late May, 1999.  The family has not followed up in helping him locate appropriate psychological counseling services.]

 

     Additional community resources to be accessed include peer counseling, life-skills training and counseling, and a variety of self-determination oriented services through the Independent Living Resource center in Portland.  [Political and administrative changes at ILR since the Fall, 1999 have made that agency an inappropriate resource for satisfaction of these needs.]

 

     A thorough documentation of Mike's likely specific learning disabilities should be accomplished through testing, evaluation, and training/schooling/employment recommendations by adult learning disability specialists familiar with Asperger Syndrome.  Combined with a full adult functional evaluation, paid for either by PPSD, VRD, or through private means, information relating to Mike's full range of capacities and challenges is essential to provide him with the means for a fully informed choice of a primary employment goal for his Individualized Plan of Employment.

 

     Limited testing and evaluation currently available in-house at VRD simply does not provide a valid or reliable basis for substantial informed planning for him.  His counselor, familiar with clients at the more severely impaired end of the autistic spectrum, showed some motivation to understand high functioning autism and Asperger Syndrome.  Mike is his first client with this definitive diagnosis.  The counselor has told Vallyn that he is an adult with ADD.  Because he shares many of the behavioral manifestations of persons diagnosed with a pervasive developmental disorder, his counselor may be sensitive to many of the executive function and cognitive challenges of persons with this diagnosis.  His branch manager hopes that this counselor's own disability may make him more sensitive to persons with Mike's challenges.

 

     If community college is factored into Mike's immediate future, the Sylvania Campus Disabled Students Services office has a staff familiar with Asperger Syndrome and specialists in learning disabilities who can assist him in the choice of coursework and the design of accommodations essential to a successful educational experience.  Staff is also available for drop-in and appointment individual counseling not otherwise available in the general student community.

 

     Many older and traditional counseling approaches are ineffectual for individuals with Asperger Syndrome.  Short-term concrete problem/solution oriented personal counseling with professionals familiar with late adolescent and young adult Asperger Syndrome is available within the mental health community of the greater Portland metropolitan region.  Once Mike is enrolled in the Oregon Health Plan, it is essential that professionals with whom he relates help him identify those of life-skills in which he has major limitations, and recommend training and adjustment to make the best use of these skills and talents.

 

     During his period of eligibility determination, I may recommend that Mike be encouraged to consider volunteer work with mature adults.  Young adults with Asperger Syndrome are generally not suitable matches for most traditional roles, and may not initially relate well with their age peers.  Because of his interest in computers and his low-key approach to others,  Mike might be a good coach or assistant instructor in programs for older adults interested in learning computer basics.  [Thoughts of making this recommendation were later abandoned due to Mike's almost complete withdrawal and isolation from others during most of the summer and fall of 1999.  I felt that this would be an inappropriate "push," and at that time, I was not as actively involved with Mike or his parents.]

 

     Other benign kinds of volunteer work might involve work with the Oregon Food Bank which has a highly flexible, individual approach to volunteer utilization.  Were Mike interested in working as a volunteer, it is essential to recognize that he may communicate better with others if a common activity centers around the manipulation of concrete objects or with areas of expertise in which he feels a sense of command.  A sense of personal control as well as an ability to control or craft an immediate working environment is important for persons with Asperger Syndrome.  [His subsequent VRD work assessment placements demonstrated this exquisitely by failing to provide any such opportunities.]

 

     As his vocational rehabilitation counselor has already seen, Mike's response to change and challenge is cautious and slow.  The pace of his progress in other areas could frustrate individuals expecting "more" of him due to his obvious intelligence and verbal expressiveness.  Individuals with Asperger Syndrome are not particularly tractable, and often resist what to others appear obvious and easy ways of doing things.  They may be easily misled by overly enthusiastic offers of assistance and guidance.  Intuiting others' intentions through gesture, facial cues, posture, and other non-verbal expression presents a major challenge.  In Mike's case, the challenge is quite high due to his almost complete isolation from other young adults of his own age in an environment which demands interaction and flexibility outside of the predictable, family home setting.

 

     Mike is used to setting his own hours, and up to the present time, his needs have been accommodated on his terms by his parents and his younger brother.  When asked about his family, his responses tend to be solopcistic:  everything is expressed from a highly person-centered point of view.  It is not easy for him to understand the comings and goings even of members of his immediate family.  This is especially true of dealings with his younger brother, who is fully involved in the social and other life of a late adolescent.

 

     Despite his apparent emotional distance, Mike has strong empathy for others, and easily expresses concern on others' behalf when confronted with conditions of others' discomfort or oppression.  His moral code is rigidly expressed in terms of black and white thinking, another strong manifestation of Asperger Syndrome.  This does not mean that Mike is intolerant of others.  It does mean that if others have a substantial, personal impact on him, he expects the relationship to be one of respect and honesty.  Like many persons with Asperger Syndrome, he is sensitive to patronizing and being manipulated by others.  At the same time, his naiveté makes him potentially vulnerable to being a victim.  Given his present, protected environment, both parents share a concern that he could be taken advantage of were he left in a sink-or swim environment of any kind.

 

MY OBSERVATIONS UPON BRIEFLY MEETING WITH VRD COUNSELOR

 

     I met with Mike's VRD counselor on 4-29-99 in advance of a joint meeting with Mike, John, myself and his counselor and myself on 5-5-99. In that brief meeting on the 29th, I mentioned to his counselor that I may be acting as Mike's advocate.  He was intrigued with the notion, but had never encountered a person outside of a client's family as an advocate.  His initial "take" was one of interest, but caution.

 

NOTE ON ETHICAL CONFLICT

 

     Unless I formalize an advocacy relationship with Mike and his parents, I have no legitimate role in acting as a consultant the counselor or advocate on Mike's behalf.  Even if I adopt one role, I may be estopped due to a relationship conflicts in acting in my other roles as consultant to Mike's parents and moderator of the support group which he attends on occasion.

 

VRD INTAKE MEETING

 

     On May 5, 1999, I met with Mike, his father, and Mike's VRD counselor in the counselor's office at 3:45 PM.  The meeting, the last twenty minutes during which I was  not present, was an intake interview.  At the end of the meeting, the counselor entered Mike's data into the system.

 

     The counselor asked what my status was with respect to Mike and his Dad.  I explained that I would be working as a person-centered planner with Mike, a consultant to the family, and a pro-bono consultant to VRD to assure the best understanding of Mike's actual needs.

 

At this first meeting, John stated that because Mike's social skills and life skills are so limited, any effort to place him in an employment now would be counterproductive.  I urged the counselor to consider a full functional adult with a clinical neurophysiologist , and a full specific adult learning disability battery with a testing psychologist, both persons who are vendors to VRD.  I alluded to the fact of the PPS involvement, and my letter to and from the District.  The counselor agreed with me that the school district is known for shuffling off with the money without providing service to its special education student services.  He said he would work to secure funding of the tests through inter-agency negotiations.  He requested a copy of my special education correspondence with the district and the state.  He also asked me for my CV and some background on my intervention with the family to date.  [I did not follow up with his request because John felt he would like to handle Mike's matters with VRD.  As things turned out, none of that documentation was ever provided by the parent to the VR counselor.]

 

 

DECEMBER 8, 1999  A CHANGE IN MY RELATIONSHIP TO MIKE AND VRD

 

     Over the past three months I have made periodic calls to John to discuss Mike's progress.  He hasn't attended any support groups for at least four months.

 

     John's cancer has returned.  A series of highly targeted chemotherapy sessions has brought some of the critical blood counts to a point where he may be able to use stem-cell therapy.  In the meantime, he is substantially incapacitated.  He has turned much of the day to day operations of the family business over to Judy and to the live-in business assistant, a young man who has been a major actor in the business for the past several years.  They all understand that John's present condition does not allow him the kind of attention to the business he has spent in the recent past.

 

     In my conversations with father and son over the past three months, both have expressed dissatisfaction with the VRD handling of Mike's case.  Mikes counselor  placed him in two work assessment settings, hoping to determine the nature of Mike's work readiness, and both have been dismal failures.  Essentially, they are a repeat of Mike's bad experiences while in high school in the Portland Public Schools.  Father, son and now his VR worker recognize that further exposure to such work experience settings only serves to reinforces Mike's negative expectations about work.

 

     In our telephone conversations, Mike reported that he unilaterally reduced his hours back because he did not feel a part of the work team environment.  He also felt disrespected for his contributions, which were paid for on a piece-work basis.  He felt as though he was being "used," and neither evaluated nor trained for meaningful work.  His previous placement used more of his computer skills, but even there he felt discounted.  Since the pay was so low, and his own knowledge base is very high in some areas but rudimentary in others, he felt the work to be both confusing and demeaning.  He was not sure of the reasons for his being placed at either location.  At the same time, he felt his level of knowledge in some areas was superior to that of his fellow workers, and he could not find a way to express his dissatisfaction with them, so he said nothing.  He grew increasingly less comfortable around them, and was never integrated into any of the informal social activities at work. 

 

     His final response was to physically withdraw by reverting to old, late hour and all night work patterns, sleeping late into the morning, and thus avoiding reporting to work on time.  Without announcement to his parents, his VR counselor or his employer, he planned to spend fewer days at work. Finally he stopped showing up altogether.  He felt no interest in reporting his concerns to his VRD counselor.  He feels the counselor doesn't care and doesn't understand his needs.  Otherwise, he asked, why would he have put him in those jobs in the first place?

 

     This final turn of events came to light during the routine reminder phone calls of upcoming meetings I make to members of the Asperger support group.  I make those calls to persons who haven't shown up for many meetings in a row, and these calls often encourage them to return to the group.  On several of these calls I had talked briefly with Mike's father.  He and his wife's increasing concern over Mike is evident.  For reasons outlined below, his father felt additional personal intervention was needed by someone who understands his son.

 

     Over the past three weeks I had spoken with John three times, and Mike once.  John feels that a formal advocacy arrangement with VRD may be called for at this time.  Last night I wrote a release and authorization and emailed it as an attachment in separate postings to Mike and John.  That should be signed within the next couple of days, giving me access to VRD as Mike's advocate in all matters affecting his case, including staffing issues.

 

     John identified Mike's sleep and activity patterns as something of continued concern.  When he is involved with a project on his computer, Mike spends long hours, seeming to lose track of time, and upsetting meal schedules and sleep to the point where both parents and Mike's younger brother Josh find him even more of a mystery to understand.  Except for meals, there is little regular family contact, and even mealtimes don't often find Mike present for a family gathering.

 

     Ron thought it would be helpful for Mike to receive the full adult functional neuropsychiatric evaluation we had discussed in the Spring.  Following this call, I contacted Mike's VRD counselor about the testing.  It was clear even in the brief conversation that the counselor was very hesitant to consider it.  Both the father and the VRD counselor acknowledge that in the past Mike has resisted testing.  John now says that Mike is open to being tested since he has begun to concede that he knows very little about why he does certain things and not others.  The counselor asked me inquire from my sources whether OHP's coverage will allow a full neuropsych exam.  If I find that OHP will not cover the testing, the counselor said that  VRD will pay for it.

 

     At this point, even before receiving Mike's authorization to represent him as an advocate, I felt as though the VR counselor was asking me to do his work.  Determining who will pay for testing he has known about all along should have been a part of his responsibility in assessing Mike's eligibility for vocational rehabilitation services.

 

CONVERSATION WITH THE VRD COUNSELOR

 

     The following Information comes from a scheduled phonecon I made Dec 8, 1999 at 8:30, taking about 45 minutes with Mike's VR counselor.  At the time the call was made, I still had not received Mike's written authorization to act as his advocate.

 

     The counselor felt that Mike is not work ready, and because of that, there may be little VR can do.  Without sharing my thought that this is cart before the horse thinking, I encouraged the VR counselor to keep the case open but inactive until the results of a neuropsych evaluation could provide more  information about Mike.  At the close of our conversation, his counselor indicated that the pre-vocational skills training Mike needs may not be available through VRD.  Without pushing the matter, I proposed that working with Mike's move towards independence is affected by family communication patterns and dynamics that support Mike's continued expectations of dependency.  I did not inform the worker that an ongoing assessment of the family had been a part of my work with them for nearly a year.

 

     I also proposed that independent living skills and other life skills work could be available through Mike's Oregon Health Plan coverage even if VR was not open to funding it.  There was silence at the other end of the telephone line.  I finally got to the point of suggesting that among many options, such counseling work could also be provided by VRD as an essential part of Mike's Individualized Employment Plan, and that it might be appropriate to consider revisiting the plan to include VR responsibility in the event all other funding fails.  I told the counselor I did not consider it solely Mike's responsibility to identify exactly the kind of counseling and skills training he may need.

 

     At this point in the conversation, the counselor told me he felt I was being pushy.  I informed him that the reason for my call was to explore the extent to which he felt able to work with Mike, and that I was expressing he concerns of Mike and his family which he may otherwise have not heard during his ongoing contact with Mike.

 

     It was clear to me that his counselor may be at a turning point in deciding about future work with his client.  Because he asked me to explore testing with the neurophysiologist most likely to work with Mike without Mike's further permission for me to advocate formally on his behalf, my own relationship with all parties would remain unclear.  I told him that I may contact the neurophysiologist, but that I would speak with the client and his parents regarding the nature of our further communication.

 

     At the present, the counselor sounds discouraged about further work with Mike, unless Mike demonstrates the kind of work readiness behavior that makes placing him in employment feasible.  Without expressing my dissatisfaction with his attitude, I let the conversation continue.

 

[During the conversation, it occurred to me that Mike's family had made no further effort to help Mike apply for SSI.  After securing Mike's permission to advocate, I intend to re-open discussion with him and his parents a separate move will be made to determine Vallyn's eligibility with SSI.]

 

 

OBSERVATIONS ON CHANGE IN THE RELATIONSHIP  December 16, 1999

 

     All contact with Mike, his father, and his VRD counselor up to this point has been without charge.  That relationship has now changed.

 

     In May, I accompanied father and son for their first meeting at VRD, but my relationship with Mike and John wasn't clear to his VRD counselor.  Since I had no formal relationship with them, and John had indicated that he would handle Mike's affairs with VRD, his counselor could not share information with me without breaching client and department confidentiality.  Even my role as an informational consultant to the counselor on Asperger Syndrome was not clear.  As of December 16, 1999, Mike  authorized me to be his advocate at VR on an on-going basis.  John's health condition has taken much of his physical energy.  He has turned some of the day to day operations of the family business over to his employee.  Judy is again handling more of the business details  on a day by day basis.  In many ways, except for the passage of three years, matters are exactly where they were when John's health became a major part of the family's focus.

Over that same period, Mike has not progressed towards independence.

 

A NOTE ABOUT THE FATHER -- a critical aside about the professional relationships involved.

 

     After having known the family for fifteen months, I have concluded that John, like his son, has Asperger Syndrome.  Much of the indecision, quiet denial, failure to follow through on matters of importance to his life planning and that of his son is a familiar pattern for fathers on the autistic spectrum.  The closed character of the family, the perseverance with detail to an excruciating extent, and taciturn descriptions of major emotional events surround his son and himself allows me to believe that much of the dysfunctional patterns I've observed in working with other families of AS young adults are found in the Johnson family.

 

     This is neither good nor bad, but in recognizing something this essential fact, it is easier for me to adopt a perspective lacking in my relationship with the family and with its eldest child up to this point.  It isn't at all important that I "make" anything of John's likely occupancy on the spectrum.  What is essential is that I help his son towards self-determination with the kind of knowledge not available to his father at the time he was of the same age.  With the additional stress of John's physical health, working through the trauma of any additional diagnosis for a condition essentially untreatable and small compared to his grave medical condition seems both wasteful and cruel.

 

     Throughout the year that I have dealt with the father, his recognition of Mike's needs is clear. The difficulty throughout the year has been in getting from a point of identified needs through the steps of action necessary to address them.  This is where John's challenges in the area of personal planning for assisting in his son's move towards independence are very evident.  I feel fortunate in having been included in John's trust, and am determined to maintain a relationship with him that works towards his clear expressions of hope for his son and Mike's own growing recognition of his situation in the family, vis a vis the adult community service system, and the other challenges of adult independence.

 

     In connection with John's likely undiagnosed disability (AS), I find myself having been present at a crossroad, and having chosen a particularly difficult path.

 

I could have chosen to involve Mike as a consumer with the Portland Independent Living Resources Center.  I am a peer counselor with the ILR.  My relationship with Mike and his family predates that agency relationship, and at this point, Mike and his family have been my unpaying clients for over a year. At the present, ILR has neither the staff capacity nor depth of staff training for the type of person-centered planning needed by Mike, and for intensive work with his entire support system--in this case, his family as a primary pillar of that system.

 

MIKE'S SITUATION MID DECEMBER 1999

 

     Issues for Mike all along have been his susceptibility to distraction, difficulty staying on task for things in which he has no interest, and some degree of what I call "fantasy" thought.  His schedule is askew from the other members of the household, and the only time he and his parents often see one another is over a rare common meal.  Mike continues to live more as a "mystery guest with full privileges" in the household rather than an "included" member.  His parents both speak of his distance from them; and in recalling family and personal events, in the past Mike would continue on at length without mention of the role of his family in his day to day life.  On occasions when his brother is in the room or either comes or goes, Mike simply fails to acknowledge his presence either through body language or gesture, facial expression, or words.  I have observed this same non-response when his parents come and go.

 

     Although Mike has continued to make progress with his own interests with his family's encouragement, they do not appear to support the ultimate issue of his independence.  Now, as before, Mike continues to keep information from his parents to a point where they feel him to be a stranger in their own home.  He has confided concerns more frequently with both parents, but then appears to withdraw, literally, taking his "information" with him.  I don't believe the parents have a clear "plan" in mind for him, mainly because Mike himself is profoundly adrift with respect to his future.

 

     Mike does have an idea of turning his interest in web page design into a business.  When I asked him what he would like were benefits such as education, attendance at classes of his choice or exposure to information of his choosing, he said it would be nice to take some business classes at Portland Community College.  Although he took a GED test there (results in Salem), he has had no formal contact with PCC.  I informed him that in order to enroll, all that is required is a placement test, which is conducted regularly, a simultaneous application for admission, and in his case, appointment with the Disabled Students Services office for assignment of a counselor.  I didn't emphasize the latter process, but suggested that without someone available to assist him in selecting courses who understood more about how he learns and thinks, it would be difficult for him to "go it alone."  He seemed to agree.

 

     I believe the thought of including others in his life around these future planning issues is very daunting to Mike.  Whenever the specifics of what is involved to have this happen are mentioned, a glazed, almost distracted look overcomes him.  Whether the information is too much, or the sense of threat from a proposed change from what he can predict triggers this, his thoughts, as expressed in his own words, become confused and circular.  Without knowing more about how he conceptualizes, I am tempted to suggest that he may have substantial central processing issues, and these may have been responsible for his life-long difficulty in learning in other than very small, controlled environments.  If, on evaluation, this proves to be the case, his ability to function in an ordinary, even small class setting at a community college may be seriously questioned.

 

     In a one to one setting as well as a small group setting, Mike will often appear completely disconnected from what is going on about him.  I have observed him on numerous occasions in what others, familiar with the range of seizure disorders, have described to me as absence seizures.  Approximately 25% of persons with Asperger Syndrome have developed some type of seizure disorder by the time they complete adolescence.  Some young children demonstrate such mild manifestations of seizure activity that they can only be traced by EEG.  The full range of seizure activity is manifest at or following the onset of puberty.  I don't believe I am going way out on a limb in proposing [to myself] that some of his more noticeable "absences" from involvement may, in fact, be evidence of mild seizure activity.  He has never been evaluated for this.  I don't believe he has had a full neurological workup either before or following his diagnosis as Asperger Syndrome by Dr. Gene Stubbs.  It might be time to consider it.

 

     From observing Mike's interactions on the few occasions he participated in the AS support group, it appears he is easily thrown off track, and perhaps overwhelmed by the complexity of auditory events.  On the other hand, on some occasions he appears to be acutely aware of what IS being said, and is very articulate in his observations and expression of his needs.  Once he "gains the floor" however, he demonstrates a monologue style impossible to stop or even redirect.  He does not respond to questions of others to clarify what he is saying.  Indeed, even when interrupted, he will often continue on, mid-sentence when the interruption is brief, or he more often returns to a verbatim repetition of his earlier statements.  Furthermore, when interrupted for any length of time, he will rarely recover from where his story was at the time of interruption;  it is as though he must "put the needle at the beginning of the record."  If this thought process can be confirmed through neuropsychological evaluation, it may explain his substantial reciprocal conversational skills deficits and discomfort among large--for him--numbers of people.  If my personal observation can be validated objectively, a learning disability specialist may be able to identify the conditions under which Mike could learn outside of present, hermit-like process he uses in learning new programming language and applications for his computer.  [He recently switched from McIntosh to PC operating systems.]

 

     Were he to enter even non-traditional work environments, his lack of reciprocal conversational skills plus an immature awareness of his overall presentation of self to others may hamper his ability to be recognized and respected for his contributions.  Like many high functioning, bright AS persons, he is definitely NOT a candidate for a sheltered or enclave work environment.  These observations lead to the next subject.

 

Relationship with VRD

 

     As a result of a failed double experience of work assessment through VR, Mike has gotten quite soured on his impression of his VR counselor.  In my last conversation with his counselor, at the urging of Mike's father a week ago, his counselor seemed to feel that if Vallyn isn't motivated to work, then he has 90 other clients on his caseload that may be, and that he might be tempted to back-burner Mike's case.  I suggested to him that his initial approach, and early reluctance to secure independent and recent evaluations for Mike through a neurophysiologist and learning disabilities specialist hampered his understanding of exactly what he was up against, and what Mike had to offer in the way of "handles."  His counselor acknowledged that perhaps the work assessment process was not productive, and indeed, it may have been counterproductive, since it was a repetition of series of failed experiences Mike underwent in the Portland Public Schools some four years ago.

 

     My point was that he had more than enough information from the reports of Mike school to work supervisors in unpaid, low skilled jobs to form a basis of understanding of the tasks for which Mike is unsuited.  His work assessment placements (both of them) had elements of similarity to those earlier failed experiences, and were undoubtedly the reason for Mike's lack of motivation and disinterest.  In addition to feeling demeaned and disrespected, Mike also felt that the work itself was not leading anywhere, and failed to provide a challenge for him.  The counselor may not have checked frequently enough with Mike's supervisors, or if he did, with sufficient depth to determine what was going wrong, and detect things "going South" soon enough.

 

     So far, what has been missing from any equation involving Mike and work is an understanding of what he is good at:  where his talents, skills and abilities can be capitalized upon in planning for a meaningful future as an employed person.

 

     On December 16, 1999, I visited Mike on a drop-in basis at home.  Once his father saw that I arrived, he brought two copies of the release and authorization to advocate upstairs that I had earlier emailed him.  He and Judy had not yet had a chance to discuss the release or the advocacy arrangement with Mike, but appeared somewhat relieved that I could do that with him directly.  They left us alone for a half hour to discuss the agreement, at the end of which Mike decided to sign.

 

     In our last conversation, John indicated he was uncomfortable with the informal arrangements we had in the past, and would prefer a business arrangement with contract and formal billings.  I told him that this was an awkward transition, for sure, since my original intervention was at no charge, and done with the purpose of establishing my own professional work habits and monitoring my use of time.

 

     From this point forward, our relationship will be different.  I have submitted a formal contract with cover sheet to Mike and his parents.  I have already explained my fee structure to John, and we did discuss the terms of payment.  John indicated that because of his medical expenses, things might be tight, and I assured him that knowing what he and Judy owed would probably allow him to feel some relief, rather than having the unpaid relationship to continue.  Were there to be major expenses, this would be all discussed in advance, since Mike is not the person to be paying for the services.

 

     He might, actually, were his parents to assist him in setting up his own checking account, but that will be in the future.  At present, the prime objective is to approach VRD as Mike's legal representative as an advocate, and encourage forward progress in his open case.  For that, the release will allow me to meet privately with his counselor, and perhaps the branch manager, to determine where things stand, officially, as far as his case status is, and to outline a plan of action.  Once that meeting Mike and I have had a chance to meet in advance to clarify the objectives to be accomplished at each meeting.

 

     Mike is interested in a full functional neuropsychological evaluation, and that will be the first item for discussion with his VRD counselor.  [In view of the advocacy relationship, I don't consider it necessary to consult first with the neurophysiologist likely to perform the evaluation, even were Mike to authorize me to do so.  Upon review of his suggestion, I believe the VRD counselor's  request that I do so--in any capacity--was inappropriate.]

 

     I feel it may be useful to discuss the dynamics of their counseling relationship, and offer perspective on what may be both more diplomatic an approach, and an approach that would allow him to "learn by doing" with his client rather than planning, meeting, and "doing after the fact."

 

     At that first meeting as well, I will request access to Mike's file to read the case notes and determine, with his counselor, where things either went off track, or were never explored.

 

     Because the contract with Mike has started during the Christmas-New Year Holiday period, I expect most of the first activities planned to take place during the beginning week of January.

 

     At this point, the work will be concentrated on getting a "handle" on Mike's relationship with VR altogether, and with his counselor in particular.  Hand in hand with that goes an assessment of the expectations of his parents, Mike, and his VR counselor.  It may well be that all parties aren't on the same page.  I may need to spend some time with both parents for purposes of assessing their expectations, and some separate time with Mike to determine the degree of congruency of their expectations.  In order to do that I may wish to develop a check list so that the questions asked of all parties will be the same; only the answers may differ.  Depending on the "spread," I may be able to determine the best course to bring the most salient issues shared in common "in synch."

 

     The other issues earlier identified in these case notes, namely continuation of a process for SSI application, should be explored early with Mike and his parents.  It is essential that Mike be continually reminded by significant persons in his support system of his parents' interest in seeing him move towards independence, including living arrangements separate from his family.  As a matter of course, much of his present living pattern is "independent" of the family, but not in any healthy, self-determined sense. In the family, Mike has always been allowed to "drift."  Time and circumstances may be making this continued arrangement less tenable.  Throughout my dealings with the family will remain the issue of Mike's capacity to become independent to any substantial degree.

 

     While Mike may be surrounded with the current comfort of a caring family, that may not be the case for his long-run future.  His father's fragile health and the return of John's life-threatening cancer may be events likely to cause the family's fortune to literally "turn on a dime."  John's medical expenses are climbing once again, and this time, the family's resilience and capacity to recover in the event things worsen are far less clear than when his cancer went into apparent remission three years ago.  Even with the transfer of some of the business responsibilities to a trusted employee, the family is likely to experience a major period of wrenching adjustment in the event of or at the time of his death and for some time thereafter.  I have no doubt that some substantial thought regarding his future and independence has taken place by his parents.  The extent of that, however, has yet to be determined.  How close any of that thinking is with regard to Mike's actual relationship with VRD will be the first test of the family's preparedness for those first steps.  Mike's response to concrete events in the near future may be critical in determining his overall  ability to "face the music" as an independent adult.  His own steps towards self-determination may be small, but they must be made.

 

[Post script to this paper:  As the following year progressed, I nudged the process of Mike's SSI application along, drawing reports, transcribing handwritten notes taken at bedside from Mike's father about his son's adult daily living activities, and finally preparing a summary brief for the disability analyst.  Mike was awarded his benefits "on first pop," a fairly rare occurrence with the way Disability Determination Services ordinarily works cases.  Mike's award was based on overwhelming, incontrovertible documentation of his severely impaired capacity to manage on his own.  Towards the end of the year, Mike's father died, and his mother assumed the helm to the family business.  RNM 2005]

 

 

 

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